Charlie was diagnosed with acute lymphoblastic leukaemia (ALL) in May 2011, two months before her fourth birthday. Her symptoms began more than six months before, when she developed knee pain. We took her to the hospital on a couple of occasions, but even after being X-rayed, nothing was found to be wrong.
By the start of December 2010, she’d become unwell with high temperatures and earache, which doctors put down to being a virus. She’d then go through spells of getting better and then become unwell again, before becoming really poorly at the end of January. We were sent to hospital where they discovered she was seriously ill with sepsis and was also anaemic and neutropenic.
Doctors wanted to prepare me for the possible cause of this being cancer. Charlie was initially due to have a bone marrow biopsy, but as her platelet count was normal, they were going to take a ‘watch and wait’ approach. Once the infection was under control, and after several days in hospital, we were allowed home. We weren't allowed to go out anywhere because she her immune system was so vulnerable, but her bloods kept being checked and a month later her counts had gradually returned to normal.
When we saw a consultant, I took a GP friend with me, and she asked him if he could absolutely rule out cancer. He said yes, and that again, it must have been a virus. But soon, Charlie was unwell again. She was really ill with chicken pox and then she started getting bad back pain to the point where she couldn't walk after doing anything.
We went back to the GP who referred us for physio, but we had to wait six weeks for the appointment in early May. The physio said there's something really not right and got us in with a consultant two days later who agreed and asked for some blood tests, which we went for a week later.
Within hours of the tests, I’d had a phone call asking us to pack a bag and come back to the hospital. They told me that evening she had leukaemia. This was devastating, particularly after being told at the end of February it wasn't cancer to then be told it was.
We moved that night to Southampton Hospital and Charlie started treatment the next morning. This would continue for the next 26 months, finishing in July 2013.
The long-term effects of Charlie’s treatment
Charlie has been in remission since finishing treatment. However, she’s been left with a number of long-term effects from her cancer treatment and what she went through. These ‘late effects’ are both physical and mental and have had – and will continue to have - a profound impact on her life.
Physically, she's struggled with knee pain and chronic back pain that, despite going backwards and forwards to the physio, affects her really badly. She can't stand for long periods of time or walk long distances. She tries to push through if she really wants to do something with her friends, but, as soon as she gets home, she'll collapse in bed and want to stay there for a while. Unfortunately, we can’t seem to get to the bottom of what will help and though she's got exercises she can do to try and keep her back a bit looser, it doesn't avoid the pain.
She also suffers from fatigue. Though she’s going to college this year, we know that when she finishes there, this is going to greatly affect her ability and capacity to work. Along with the back and knee pain, it’s going to affect what she can do and maybe how many hours she can work, especially if there’s a lot of standing involved.
Charlie’s treatment also affected her psychologically. Three years after she finished treatment things became increasingly difficult, and after being referred to the CAMHS (Child and Adolescent Mental Health Services), she was diagnosed with treatment-related trauma.
We also found out then that she's autistic, which explained why she struggled in some ways with what was happening to her during treatment.
She's been left with a lot of health anxiety and the COVID pandemic, in particular, was horrendous for her. She was so scared that she didn't want to go to school in case of catching it and giving it to anyone. She developed contamination OCD, which she became very unwell with. Though she’s better with this now, and has fought back the last year, it's been a really difficult time.
Charlie still has such a fear of hospitals and anything like needles. This makes things extremely difficult if she needs some sort of procedure or surgery. We've been to hospital twice for dental surgery and she hasn't been able to go through with it once she's got into theatre. That's huge and obviously a concern if she needs something doing as it's not getting done.
It’s all so horrible for her to have to keep dealing with. You sort of assume that when treatment finishes, that, in time, the memories of it will gradually fade into the distance. Sadly, that’s not been the case for Charlie and the pain she suffers is constant reminder of her cancer.
She’s really struggled with her mental health and missed so much school as a result. She’s had a lot to deal with and was having therapy to work on the OCD at the same time as really important points in her education. She also has difficulty processing information, so the fact that she even managed to sit her GCSEs this year was amazing and I’m very proud of what she’s achieved.
Why I’m raising awareness
Raising awareness of what life is like after children’s cancer treatment is really important. It helps other young people and their families who are going through it, but I also think it helps educate people who know nothing about children’s cancer. By sharing our experiences, I hope people can understand a little bit of the struggle and what families go through in terms of the challenges and the difficulties we can face in trying to get help with things.
How research will help
Research that can find less harsh treatments for children should be key. They go through so much on treatment with side effects, while some children don't survive because of the severity of treatment, not the cancer itself. Then there’s some children who are left with life-changing disabilities from the damage done by it. So, for me, the priority should be finding kinder treatments that not only help more children with cancer survive but help to stop both the short- and long-term side effects that many face.
Information about late effects and life after treatment
When Charlie finished treatment, we were given a lot of generic information and were told a lot about long-term follow-up. A lot of that information wasn’t very specific or would prepare us for what possible late effects she might develop as a result of her treatment. It was hard to know what was relevant to us and what were the important parts to take on board.
I think if we’d been given information that was more specific and identified by Charlie’s medical team to be relevant to us based on her history, it would’ve been really helpful. Information like the factsheets produced by CCLG in 2022, could really help families in the future to understand how they will be affected after treatment and gain a better perspective of what may be coming.
My advice to other families
It’s very important to keep talking to your team and keep emphasising any difficulties your child has. Ask for investigations or to be referred to anybody who could help. You just have to keep pushing to get answers and then hopefully help with whatever the problem is will come.